HI everyone.  I’m sorry I haven’t updated in a while.  Many people have emailed or called worrying since I haven’t updated in a while and I’m sorry about that.  Things have been crazy at the Mashburn house, as usual.  The kids are doing well.  Kenzie just had his 12th birthday last week.  He is growing up to be such a nice young man.  I can’t believe he’s almost a teenager.

Ken is doing a bit better.  He doesn’t throw up as often as he used to.  He still is very tired.  RT takes a lot out of a person.  He is not gaining any weight but he’s not losing any either, so we are thankful.  He is still unable to take in diet by mouth.  He can only swallow a few sips of liquids at a time.  He is still having great difficulties with Mucousitis, which is preventing him from swallowing more than a few sips at a time.  He is getting ready to start the process of getting the permanent prosthesis’ for his mouth.  This is an 8-12 week process.  Everything just takes soooooooooooooo long.  We are soooooooooooooo ready for him to be back to himself, or as close as we can get him to it.  He is depressed because he thought (I did too) that he’d be further along in his recovery by now.  I’m not sure what is harder on him, the Cancer, or the not being able to do the things he took for granted before…like working, running with the kids….arguing with me

Ken has wanted to go back to work for months now.  Who am I kidding, he never wanted to stop working.  One of his Dr’s told him at his last appt he could start looking to go back soon.  His other Dr. at the next appt. says he should wait a while.  I agree with the 2nd Dr., he is just wiped out.  He sleeps all of the time. (I thought it might be depression but the Dr. said that might be some, but mostly his body is just depleted)  When he does do something, like go with us somewhere, or work on the car, he is so exhausted afterwards he basically passes out.  Right now we are just focusing on getting nutrition in him and letting him rest and build back up his stamina and health.  We are hoping he can start eating some real food soon since he will be getting his prosthesis’, and will be able to chew, which makes you produce saliva, which will help him swallow. 

Since he won’t be working for a while yet I am looking for a job.  Not having much luck as this area is economically depressed.  There was an article in the local paper about how even the teenagers were having trouble finding summer jobs.  I just put in an application to deliver newspapers so if you all could pray that that works out I’d really appreciate it. Ummm, also pray that if it works out that I make some $$ at it since I have to use our car and pay for gas.  We are worried about but willing to take a chance on it since there isnt’ much around here and what I do find has to be flexible enough to take Ken to Cleveland at least once a week, sometimes 2x, for the next 3 mos or so.  So, my options are limited

Everyone keeps asking us if we are moving home soon and trust me, we want to.  We plan to move back as soon as finances allow and we get Ken’s final prognosis.  The Dr’s won’t do any tests on Ken to see if the RT worked until Fall so we have to wait until then.  I’ve not been able to find a Dr. back home who is a specialist in Ken’s type of cancer (ACC, if any of you know of any, PLEASE let me know) so once we do move back we will have to drive to Cleveland every 3 months for his check ups.    Also, the Prostodontist is just now starting on the “reconstruction” of Ken’s mouth with prosthesis’ now and that will take at least 8 weeks.  If we had moved back home we’d still have to drive to Cleveland weekly because this guy is the only Prostodontist in OH.  At one of our last appts there were people in the waiting room from Boston and Florida.  As soon as all of this is done, and finances allow, we will be back home.  I can’t wait.  One of the hardest things of this whole nightmare we’ve been living in the past 8 months is that we are so far away from our family and friends. 

Throughout all of this we have seen that God will take care of us, no matter what.  He works through people in amazing ways.  We know we have people praying for us, people doing amazing things for us, people just being there for us and we are comforted by that.  Thank you everyone, for all the prayers and everything else you’ve done.  Someday I’ll write about how during his nightmare, amazing things have happend.  We have been blessed by so many people, relationships have been restored, we have gotten closer to people, Ken and I have gotten closer, people have helped us in ways we had never imagined before.  One day we plan to keep the chain of love going, helping people who need it, being there for someone in the hardest days of their lives, doing little things to show someone how much we care.  This is something we all know to do, and try to do, but things get lost in the day to day hurry-scurrey of life and you think, “Oh, I have time”.  “I can do that later”, next week, next month now, next year.  This  disease has taught us that there isn’t always time, we can’t put things off, we have to do now.  It doesn’t always mean grand gestures, little things count to.  We try to do that now, and can’t wait until the day when we can do more.  It will come in time, I know it.

Thank you for keeping all of us in your prayers.  You all are in ours too.

Wendy

I haven’t posted in a while because I had nothing positive to report.  Ken was not doing well at all.  He lost 16lbs in a little over 2 weeks.  He could keep nothing down for days.  The Dr. down here wanted him to be admitted in Cleveland because he said there was nothing else they could do down here to control the vomiting, but Ken refused to go.  None of the nausea meds were working because the vomiting is from the Mucousitis, not nausea.  He chokes and gags on mucous in his lungs and throat and eventually, whatever is in his stomach comes up.  Not fun.  Needless to say it has been very stressful in our home the past few weeks. 

The food the insurance co. was paying for was producing tons of stomach acid, which was contributing to the vomiting also.  I fought with the insurance co. for about 2 weeks to get them to cover another brand of food which Ken had had been on about a week a little over a month ago that was given to him so it wouldn’t expire and go to waste.  When he was on this food his vomiting, while not completely gone had noticeably decreased.  They didn’t want to cover the other food because it was more expensive, and “pretty much” the same as the other brand, just made by a different company.  Well, in this case “pretty much” made a big difference.  Persistence paid off and they finally agreed.  He has been on the new food a few days now and has not vomited very much at all.  Still too much though.  One of his Dr’s told me that it takes a person a long time to starve to death.  Nice huh?

He has lost another 4lbs in the past week, as of Sunday I think.

Now for the good news.  A little over a week ago Ken has been able to swallow a few sips of water, broth, etc.  The past 3 days he has been showing signs if improvement.  He doesn’t look quite as pale.  We were told about “Magic Mineral Broth” which is given to Chemo patients that are having problems with nausea.  It has some interesting ingredients in it (seaweed for one) and vitamins and minerals.  Ken is able to take a couple of sips of it.  Sometimes he is still not able to swallow.  If he can’t swallow, I stick it in his tube.  I really do think it has been helping.

Ken really doesn’t want to go back to the hospital.  We have an agreement that if he starts doing worse or losing more weight, he will go with no argument.  Even though he has lost 4 more lbs. I agreed to not insist he go now because I can see that’s he’s doing a bit better.  Also to give some time to the new food to work.

Ken is on a mission to prove to me (and himself I’m sure) that he is feeling better.  He has taken the kids and I kite flying, fishing and rocket launching.  While these adventures really wear him out, it’s nice to see him out having a good time with us. 

He is not out of the woods yet.  Please keep praying for him.  And for the rest of us.

Wendy

Ken was released from the hospital yesterday afternoon.  He is still feeling pretty crappy but he’s only vomitting about 2x a day now.  He’s no longer throwing up all of his feedings and meds so the Dr. said if he wanted to go home, he was stable enough.  He wanted to go!

He had a rough night last night and was up most of the night, throwing up once and choking the rest of it.  He finally settled down about 7am and has been sleeping since.  I hope he has a better night tonite.

If you guys could say some extra prayers for him I’d appreciate it.  He’s really depressed and tired.  He’s tired of being sick and told me last night that he doesn’t even feel like he’ll ever get better.  It’s been 12 days since his last RT treatment and he was hoping to be off his feeding tube treatments, or at least able to swallow by now.  While I think being completely off the tube feedings by now was a bit optimistic, I did think he’d be able to at least swallow by now, but he can’t.  Everytime he tries to swallow even just water he chokes.

This whole thing has just taken a huge mental toll on him.  Please keep him in your thoughts and prayers.

Wendy

Well Ken is still in the hospital.  The vomiting has slowed down alot and while it’s still there it’s not as bad.  Now he has contracted something called C Diff which is crazy diarrhea commonly picked up in the hospital.  It can also be caused by antibiotics, which he’s had a lot of in the past few months.  He will not be leaving until that is treated and he can keep his food down for 24 hours.  I spent most of the day at the hospital helping him bathe and making sure he was communicating with the nurses and the Dr’s ok.  There was a problem with him not gettting his nausea meds because he wasn’t asking for it.  Ken, whose mouth hurts all of the time, but especially when he tries to talk just figured they’d give it to him when it was time.  The nurses were expecting him to ask.  So, he had some more nausea/vomiting this evening.  I got the communication problems straightened out and requested that they just give him a dose every 4 hours until further notice without him having to ask so hopefully he’ll start feeling better now.

There is also the issue of the infection he has in his ears, behind his nose and tongue.  They weren’t treating that specifically.  So, the nurse left a note for me in Ken’s chart to followo up on that, since the Dr. came in about 6:30pm but left because Ken was supposed to be set up for isolation but wasn’t yet.  He said he’d come back but by 8:30 he still wasn’t back so I had the nurse page him and he had already gone home.  ::sigh::  Hopefully I can get that straightened out tomorrow. I sure don’t want that infection to get worse while they are treating the other one since the nurse said the antibiotics they are giving him for his gut

We are hanging in there.  Please keep us in your prayers.

Wendy

Well, it is 4am and I just got back from taking Ken to the ER this evening.  Yesterday we saw his surgeon and he was diagnosed with an infection involvoing the area behind his nose, his ears, and his tongue.  He prescribed antibiotics for that and we will follow up with him in a month for that, and to have another tube put in one of his ears.

Ken has never really stopped vomitting since the last time he was in the hospital.  It slowed down alot, but never completely left.  Well, for the last 3 days it has been increasing, getting really bad last night and today.  So, he’s back in the hospital as he can’t keep down any of his meds (including his anti-nausea meds) or his feedings.

So please keep Ken in your prayers.  He is just so tired of all this crap.  And I’m tired of it. 

RT is a cumulative process, so we were told things will probably get a bit worse before it gets better.  I know God is not supposed to give you more than you can handle.  I keep repeating that in my mind.  I cannot imagine how he could be any sicker than he already is.  He told me he sees how people just give up not caring if they live or die.  He is really miserable and has been for weeks.  Hopefully all of this sickness means that the RT is really working.  The surgeon told us yesterday we might not know for 3, 6 or 9 mos whether or not it worked.  ::sigh::

Please just keep us, especially Ken in your prayers.  We just need a vacation from all of this sickness and hospitals and medecine and tests.

Wendy

Well, as I said before Thursday was the last day of RT.  Ken is actually sicker than he was.  He sounds very congested and is constantly coughing up and choking on long (4-12 inch) “ropes” of mucous.  I know, probably TMI for all of you.  Sorry.  I just wanted you all to have a good idea of what he’s going through right now.  He sleeps about 20-40 minutes before waking up and doing it all over again.  He’s really having a hard time.  There is really no way to medicate this, it’s just something he has to go through.  This on top of the mouth sores, tongue swelling, sores, etc. he was already going thru.  Please continue all the praying you guys are doing and please specifically pray for him to get some relief from all this choking/coughing so he can get some rest.

Wendy

…RT that is.  30 treatments completed.  They gave Ken a T-shirt.  It was a Relay For Life T-shirt listing all the recent sponsors.  I really think they should have given him a “I went through pure hell and 30 Radiation Treatments and all I got was this lousy T-shirt” shirt, but hey, Relay For Life is a great cause so he’ll wear it proudly.

So this phase of the journey is over.  Now it’s time for recovery.  The RT Dr. said it would probably take him a while to recover and be back to his old self.  The effects of the RT on his body have been profound.  It will take him a long time to be able to eat real ffood again and be able to get rid of his feeding tube, and that will be after he gets his new prosthesis, which will be 4-6 weeks, depending on how/when his mouth heals up. 

Monday we see his surgeon for a follow up with him.  We were told before that the RT Dr. would be following up in 3 mos. to see if the RT worked.  At yesterday’s appt when I asked him about it he said he would see Ken in 2 weeks to check on his RT symptoms but that was it.  The day before that the Oncologist told us that he wouldn’t be seeing Ken again unless the Cancer came back in another spot.  And at one of the appts. after the surgery, his surgeon told me that he would follow Ken through RT but after that he wouldn’t be his Dr. anymore because Ken’s Cancer was not curable by surgery so I don’t know what is going to happen but I intend to make sure that no one drops the ball and he gets proper follow up care. 

I need to wrap this up before WWIII breaks out at my house.  Tommy is taking a bath and has about 20 of his Hotwheel cars in there with them, giving them a ”car wash” with the girls face scrubbing brush, their apricot face scrub and lavendar body wash.  I need to go save him before Dani and Cait get to him.

Please continue to pray that Ken recovers and that all of this hasn’t been for nothing, and that the RT worked.

Wendy 

I haven’t been able to update in a while since the computer has been acting up (again).

Ken is still suffering from the sife effects of RT but he is hanging in there.  Only 3 more to go!  We will be so glad when this is over.  He is unable to talk at all, still having a bit of vomitting, tongue has blisters and sores in the rest of his mouth but he is hanging on for Thursday.  He is anxious to get back to work.  He told me last week that after he thought he’d need about 2 weeks to recover enough to go back to work.  I think he’s a bit optimistic but we’ll see.  He won’t be able to get the permanent prosthesis for his mouth until at least a month, possibly 6 weeks or a bit more depending on how his mouth heals up so I think he should at least wait until he has that.  Actually he’ll have to because he will not be able to communicate very well until he has that.  But at least we see the light at the end of the tunnel now.

Then we have to wait 3 months to see if RT worked.  I certainly hope it has.

Wendy

Ken got released last night a bit before 9pm.  He is still vomitting, but not nearly as bad.  When they released him he hadnt’ thrown up since monday night.  Well, last night about 11 or so, he started up again.  He has thrown up a few times today so far.  The anti-nausea meds he had in the hospital are different than the ones they sent him home on so we are hoping his body will adjust, and he will be able to keep down his food.  That late at night all the pharmacies around here were closed but I was able to find one about 35 miles away and get his meds. filled.

Please continue to pray for him, he’s sick and tired of being sick and tired.  We are all tired.  On the bright side, only 6 more treatments to go.

 Wendy

Ken’s still in the hospital but doing a bit better.  He was able to keep some broth down last night and this morning so they are going let him try a feeding of his “food”.  Hopefully that will stay down.  Unfortunately now he is having more sores on his lips, mouth and throat.  He is on pretty storng pain meds for that. 

He did have another RT treatment today.  The RT Dr. doesn’t want anymore delays in order to keep up the culmative effect of the RT.  Let’s pray that he makes it thru the next few weeks with as little side effects as possible.

Wendy